pg iv Importance of a Clinical Definition
The Greek origin of syndrome is syn together, and -drome - a track for running. One must determine the tracks of travel and observe the travel of a patients syndrome components. Because research definitions define a static collection of symptom entities, they have ignored or downplayed the critical dynamic features of this syndrome, as lived by patients. The normal fatigue/pain pattern directly related to felt causal action and adjusted by activity/rest rhythms is broken in ME/CFS. As a result there are cumulative physical and cognitive fatigue/pain and crashing patterns, which are criterial in this Clinical Definition. The objective postural cardiac output abnormalities correlate with the degree of reactive fatigue and overall severity of ME/CFS. These findings could supply an objective marker for fatigue severity and duration, and help explain why ME/CFS can be so disabling. It is important for the clinician to observe the dynamics of the whole cluster of symptoms in their interaction, additive effects, and the disruption to patients lives over longer periods of time.

Pg 2 Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and
mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue
and/or pain and a tendency for other associated symptoms within the patients cluster of
symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.

Pg. 3 & 4 1. FatigueFatigue is an inappropriate label because the fatigue experienced in ME/CFS is not normal
fatigue whereby energy is promptly restored with rest. The pathological fatigue
experienced in ME/CFS may combine exhaustion, weakness, heaviness, general
malaise, lightheadedness, and sleepiness that can be overwhelmingly debilitating.

By definition, the patients activity level is reduced by approximately 50% or more. Some patients
are housebound or bedridden and dependent on others for their daily care. ME/CFS is
actually more debilitating than most other medical problems in the world9 including
patients undergoing chemotherapy and HIV patients (until about two weeks before death).

Cognitive fatiguing may be evident when the patients responses become slower, less
coherent, and s/he experiences more difficulty in word and information retrieval. The
pathological components of fatigue should be identified in order to provide appropriate
treatment. Orthostatic intolerance, the inability to tolerate sustained upright activity, may be
associated with the overwhelming exhaustion, weakness, and urgency to lie down experienced
in ME/CFS. Often there is arousal fatigue due to poor sleep quality and sometimes quantity.Oxygenation fatigue is caused by insufficient oxygen being delivered to the brain and tissues.
In metabolic fatigue, the cells are unable to transform substrates of energy into useful
functions. Muscle fatigue is common. Patients who also meet the criteria of FMS usually
experience structural fatigue.

2. Post-Exertional Malaise and/or FatiguePhysical or mental exertion often causes debilitating malaise and/or fatigue, generalized
pain, deterioration of cognitive functions, and worsening of other symptoms that may occur
immediately after activity or be delayed. Patients experience rapid muscle fatigue and
lack endurance. These symptoms are suggestive of a pathophysiology which involves
immune system activation, channelopathy with oxidative stress and nitric oxide related
toxicity10, and/or orthostatic intolerance. Recovery time is inordinately long, usually a
day or longer, and exercise may trigger a relapse. The following chart indicates some of
the documented dysfunctional reactions to exercise that patients may exhibit11:

(sorry - don't know how to make thumbnail bigger - you may have to follow the doc link and then go to page 4)

Those extracts are great, IF. Even though I don't have severe ME, I can identify with all of that.

I can understand the value of this in the early stages - that's when I visited doctors. With hindsight, it was simply an elimination exercise - every test under the (UK) sun, i.e. LIMITED !...all negative. So then I could finally crawl away and suffer in silence.

I 'm not sure whether I was lucky or not, and would be interested in others views. I saw Dr.Glover in Bristol (think he has been a leading light in HIV?). He would never tell me that I had ME, always that he'd found Toxoplasmosis, and that it would sort itself out soon (20 years later.....).

he always encouraged me to carry on as normally as possible. To continue exercising, continue working, even continue enjoying the occasional pint! As it happens, although it's been hard, this has not put me in a wheelchair, and I carried on working full time until fairly recently. Having said that, I never recovered, and can't see how I ever will unless a magic bullet is discovered.

So, if GP's have this information, what will change, and will it be the best advice? I don't know.

Views anyone?

(Sorry if I have completely missed the point of the original post :innocent1: )

What a great idea Andrew - a reading list for doctors. I'd love to see what you have on it. I never got beyond the Canadian Consensus Overview.

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I have the Canadian documents on my reading list. I want to add a PEM article because I think PEM is one of the two most difficult concepts for doctors to understand. So I want to underscore this by having a good standalone article. BTW, the other difficult subject for doctors is OI. But I already have an extra article for this.

So, if GP's have this information, what will change, and will it be the best advice? I don't know.

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The first list I drew up came as a result of my fuming about how doctors refer us to Rheumatologists, and they never know anything. I sent the list to American College of Rheumatology. I figured they would ignore it, but at least I would have tried.

I started to look at my list again after I got a call from a friend who is in the hospital. Her doctor was treating her with disbelief when she mentioned orthostatic intolerance. He had never heard of it, and was not about to believe a patient. So I sent her the list I had, and started to see how I could improve it.

How much good will this do? I assume not very much. But at least I will have created this for when someone wants something he/she can give to a doctor. I think it will also be good for those doctors who are sincere about learning.

Tomorrow, when I'm at work, I'll try to get some articles on PEM. I have great access at work (I work in a hospital) and I have access to a lot while at work. The only problem is many of the computers are "locked down" so you can't download certain types of files. They've had a lot of trouble with viruses and people downloading stuff so change what you can access frequently. It's frustrating since I have access to many medical journals but depending on the computer I'm at, I may or may not be able to download a .pdf file.

I'm doing something similar, basically putting together a reader for my doctor (like I used to for my students) of what I think is the most relevant information for him to know for treating patients in a constrained clinical setting (both time and money). He's usually pretty responsive to information that patients bring in. Indeed at one point a few years back he actually told me to do research online, which made me laugh as he has no idea how much I read online. ;-)

I'm a patient at the county health department and my doctor is known throughout the county for being a "workhorse" as my/his nurse put it. I don't know how influential he is beyond his own patients, but I figure it's a start. And I already have my case worker at Aging and Disability Services eager to get a copy of my reader after he called me one day on whim hoping I might have more information on ME/CFS to help him with another client. Needless to say, I was happy to help. :-D

For post-exertional malaise, I too would recommend the Snell-Bateman article and Light-Bateman article as well as one by Lenny Jason's team and a recent one on exercise-induced oxidative stress (note that all of the above links are to the abstracts at PubMed but the ME Society has many of the full articles in PDF format at their website). In terms of exercise (as doctors need guidance about ME/CFS and exercise) I've focused on the work of the Pacific Fatigue Lab, Dr. Bateman's article in a recent IACFSME bulletin, and was going to include links at the end that he can recommend to patients such as the video presentation from the PFL group and the CFIDS Self-Help site. Oh and I'll be including some of Lenny Jason's research on the "Envelope Theory" too.

I think it would be a great idea for us to share what we're putting into our reader/reading list. And I know at the moment I'm looking for good research on anti-viral treatments.

I need some help. I'm updating my reading list for doctors. I'm looking for a good article about post exertion malaise. It would be good if the article included some citations.

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Andrew,

Help is on its way. I'am a foreigner, so don't bother my English. I would like to recommend de Becker e.a., VanNess, and Paul. I made this list - below. I would not recommend the ones with a ( ).
Maybe you could at least use de Becker, Lane, Paul. L. etc etc. I could sent you quotes also.

Help is on its way. I'am a foreigner, so don't bother my English. I would like to recommend de Becker e.a., VanNess, and Paul. I made this list - below. I would not recommend the ones with a ( ).
Maybe you could at least use de Becker, Lane, Paul. L. etc etc.
[...]
At your service!

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That is an amazing list you posted. It's the most comprehensive list I've seen. I wish we had one for every topic. It's great.

I'm doing something similar, basically putting together a reader for my doctor (like I used to for my students) of what I think is the most relevant information for him to know for treating patients in a constrained clinical setting (both time and money).

I think it would be a great idea for us to share what we're putting into our reader/reading list. And I know at the moment I'm looking for good research on anti-viral treatments.

That is an amazing list you posted. It's the most comprehensive list I've seen. I wish we had one for every topic. It's great.

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Wow Lugdunum - what an amazing first post! Welcome to the forum.

I agree with you Andrew and Michelle. It would be great to share what we have for reading lists for doctors on each topic, and have one for every topic. Maybe we could start threads, titled something like Doctor's Reading List: PEM no discussion and compile the good articles we have.

Hmm, in thinking about it, realize we want one page that everyone can print out to bring to their doctor. I guess then we'd need a preliminary thread like this, Submit PEM articles for Doctor's Reading List, and then someone who will collate them all on one locked thread, Doctor's Reading List: PEM

I don't know. What does everyone think? Do you think that will work? Do you think it would be worth doing? (it seems wonderful to she who wants to database the world, but am I going too far?)

If people think it would be valuable, I'll volunteer to do it for PEM. Am writing a note to myself to tackle it when I feel a bit better. If anyone wants it faster, or has already done it, I will cede my spot in the volunteer line - just let me know.

Hmm, in thinking about it, realize we want one page that everyone can print out to bring to their doctor. I guess then we'd need a preliminary thread like this, Submit PEM articles for Doctor's Reading List, and then someone who will collate them all on one locked thread, Doctor's Reading List: PEM

I don't know. What does everyone think? Do you think that will work? Do you think it would be worth doing? (it seems wonderful to she who wants to database the world, but am I going too far?)

If people think it would be valuable, I'll volunteer to do it for PEM. Am writing a note to myself to tackle it when I feel a bit better. If anyone wants it faster, or has already done it, I will cede my spot in the volunteer line - just let me know.

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IF - Fantastic idea! I'm afraid it's unlikely that I beat you to this. As it is you've found an amazing amount of fresh information just this month! I can hardly keep up with the reading. :tongue: :Retro smile:

Given the criticality of PEM getting from a generic 'chronic fatigue' to a true 'CFS/ME' diagnosis it's important for doctors to see papers that document the medical basis of what we feel/report. If a doc 'gets it' you probably have an believer. So in that regard a PEM reading list may top the list. That is until we have proof of XMRV being causal, that is.

I see this intermittently in various places but I don't think it gets point out enough. The term post-exertional malaise get bandied about without a clear definitions of what if means, making it confusing for healthcare staff to distinguish it from the fatigue that people with many other illnesses get from exertion. Some characteristics that should be brought up more are the sore throats, flu-like symptoms, enlarged lymph nodes, cognitive confusion people get aside from exhaustion. The former symptoms are NOT typically seen in other illnesses where people do get fatigued after exertion.

What I'm thinking of doing is starting a new thread about resource lists for doctors. I would post my list, Michelle could post a list, and anyone else could post a list. People could also offer feedback on the lists. OTOH, what Lugdunum did was different, and probably more amazing. I didn't realize there were that may studies about PEM.

What I'm thinking of doing is starting a new thread about resource lists for doctors. I would post my list, Michelle could post a list, and anyone else could post a list. People could also offer feedback on the lists. OTOH, what Lugdunum did was different, and probably more amazing. I didn't realize there were that may studies about PEM.

I don't know when I'll get to starting the other thread. If anyone else wants to start it, feel free. I just can't concentrate on it now. I have other health problems that are acting up, and it's occupying my mind.

At the same time I don't want to have people going without references. I just remembered a great site for references. Here are some links there.